Defining the Autism Debate
I am sure that Dr. Chew loves her son very much - and she loves him just the way he is. That is fine and admirable. But Dr. Chew does not speak for the countless thousands of parents that I have met who love their children just as much, but don't think of their children's condition as inevitable, nor as something to celebrate.Strong words. But it's important to distinguish here between "physical illness" and "autism," and between "treating" and "curing" autism.For these thousands of parents, autism is not a quirky nod to human diversity. It is a nightmare without end.
I have seen their wonderful children. I have heard them wail in pain the whole night through, bang their heads into dented closet doors, hang their inflamed and pain-wracked bellies over the sofa back in vain attempts for deliverance from the agony they cannot describe, because they can no longer speak.
The symptoms of autism, as described in the official literature, do NOT include gastrointestinal problems or other issues that would cause physical pain. At this point in history, there is no clear agreement on whether children with autism are more likely to have painful GI symptoms at all. Obviously, when a child is in physical agony - they need treatment. No one, certainly not Chew or Raymaker, would ever suggest that a child in pain should remain in pain - or that a child with physical symptoms should not be treated.
But gastrointestinal pain (or any other pain) is not the same thing as autism.
The symptoms of autism DO include specific challenges that can be treated and improved. And so far as I am aware, no one has ever suggested that children with autism be denied basic educational support, or therapy in areas like fine and gross motor skills, speech, or life skills. Certainly, from my knowledge of Kristina Chew's AutismVox blog (I'm as not familiar with Dora's work), she is an advocate of many types of treatment for the symptoms of autism.
The autism community is not in disagreement over whether people with autism should be left in physical pain despite the availability of medical treatments. And I can't imagine that many sane individuals would question the right of children with autism to an appropriate academic and physical education.
The question under consideration is whether the differences in thinking and perception which are absolutely central to autism spectrum disorders should be considered disorders to be cured - or traits to be valued. This is a serious question, and one which is likely to be under debate indefinitely. That's because it is a question which is answerable only on the basis of personal values, experiences, and beliefs. In fact, it may be a question on which, in the long run, we may have to agree to disagree.
By setting up straw men, Mr. Kirby has managed to make two strong advocates of people with autism look like monsters - not an especially helpful or practical direction to take. In fact, however, he has also put his finger on a question that has plagued us since written history began (at least). That question: how shall we respond to individual differences among human beings?
Comments
Kirby does not set up strawmen with these people he criticizes. They are indeed monsters, in my opinion, your apologia for them notwithstanding. Chew and her Neuro Diverse crew demean and discount the people from families who suffer from autism — autism the stark disability, not autism the musical or autism the lark in the park. To deny the search and desire for cures for the disabled is immoral and monstrous. What Chew and crew expounds is soft peddled hate speech against autism families. This needs to be exposed, not apologized away by people who should know better. Lenny Schafer
“To deny the search and desire for cures for the disabled is immoral and monstrous.”
And who says that Lenny? You or the disabled themselves?
It is, I’m afraid, you and your crew of flat-earthers with no science and no ethics who demean autistic people from all over the spectrum. Both high functioning people like Dora Raymaker and low functioning people like my child.
What is it you think you’re exposing Lenny? A desire to listen to other autistic people speak about autism?
Although I do not agree with all of Mr Schafer’s views I agree with his comments on this topic. People receive an autistic disorder diagnosis because of serious deficits that restrict their quality of life, and can even lead directly to serious self injury and loss of life.
More specifically, I agree with Mr. Schafer that the propaganda put forth by Neurodiversity advocates constitutes hate speech against severely afflicted persons with autistic disorders and against their families and it is time we stopped being overly polite about it.
The founder of the Autistic Self Advocacy Network is in fact a person with Aspergers Disorder originally diagnosed with ADD. And HE is going to set policy for families fighting to help their severely autistic children?
It is time to start holding ASAN and others who misrepresent the realities of autism disorders accountable for their misrepresentations.
But, Lenny, do you agree with my point that we need to clarify our terms so that we can actually pinpoint areas in which individuals agree/disagree? IMHO, we’re having an awfully tough time doing that.
When David suggests that Chew and Raymark would allow a child to suffer agonies of GI pain rather than cure autism, he’s creating a false dichotomy. I’m quite sure that they would would rush said child to the doctor – but AT THE SAME TIME they may disagree with you (and David) on the curing-autism issue.
In other words – you can be a caring and involved parent who deals well and efficiently with medical and educational issues and ALSO disagree with you (and many others) on whether or not autism, per se, should be “cured.”
Lisa (autism guide)
“Recovery from autism is neither possible nor desirable.”
This statement is the core of what wrong with the ND movement.
This is saying to every parent out there with a child on the spectrum that your child has a terrible disorder, one that will make their life very difficult, yet it is not possible to recover from it, so you shouldn’t even try.
More importantly, it says that you don’t want them to recover from it.
Think about that statement. It says, my child is hurting, I don’t want them to get better.
What sort of parent says to their child, I know you have a terrible disorder, yet I do not desire you to recover from it?
These are not the words of a caring parent. These are the words of a parent who does not care or worse, a parent who has given up.
Again – I think it’s important to distinguish terms. No sane parent, and certainly not Kristina Chew, would allow her son to languish in pain without taking action! And virtually ALL parents of children with autism choose to treat those children for symptoms.
The question at hand, therefore, is not “shall I allow my child to suffer physical pain?” or “shall I choose not to support or educate my child according to his needs?”
The question is – given that we WILL care for our children when they are physically ill, and we WILL ensure that they get treatment for their challenges, and we WILL fight for their education – how do we respond to the differences in perception, thinking and behavior that are at the core of autism?
If we believe that those difference, themselves, cause pain – and have no positive benefits – then of course we want to end them (or “cure” them). If we believe that those differences, themselves, are valuable and worth preserving, then we support and enable them.
But among the individuals whose ideas we are discussing, NO ONE is suggesting leaving medical illness untreated, avoiding education, etc. In the wide world, there are certainly those who neglect or abuse their children with autism – but those people don’t include spokespeople like Kristina (or Lenny, or Kev, or Harold!).
Lisa (autism guide)
Lisa (autism guide)
Lisa
Autism disorders and deficits are more complex than simple presence of absence of physical pain. The serious communication, social and behavioral deficits which define autism spectrum disorders and in particular autistic disorder, impose serious restrictions on the abilities of some autistic people to understand the world, to understand communication, to communicate, to function in the real world. These deficits can mean lives of dependency and isolation. They can also mean self injury, vulnerability to abuse, and shortened life spans.
By trying to downplay these realities and by arguing that parents have no right to speak for their own children, to protect their interests, Neurodiversity advocates are breaching the human rights of those autistic children and family members who love them.
Believe it or not, I read both Lenny’s newsletter and Autism Vox. I learn things from both. I sometimes disagree with both. But I like to sort things out for myself.
I am a parent of a child with “moderate” autism. And I have a “moderate” view of debates such as these.
I have consulted a DAN doctor, but didn’t see great results. But I absolutely do not discount the results my friends have seen in their children. I think we have seen different results because our children have different kinds of autism.
I am becoming increasingly frustrated with the absolutists is this debate. Whether it’s the causes or the treatments, we have people in different camps who proclaim their way is the only way. I think really we are looking at a group of disorders/ways of being with different causes and different strategies for improvement (in some cases, huge improvement). There is not one way.
Sorry to sound like a cliched version Rodney King, but can’t we try to get along?
I have kept this post anonymous and have not blogged, even though I am a writer by trade, because I do not open my family to the pillorying so frequent in our fractured community, most recently of Kristina Chew.
I am all for civil disagreement, but it has to be civil. Being civil means not making assumption about the parenting skill and choices of people we disagree with, especially when we really don’t know them.
My wish for 2009 for the autism community is that we step back from our entrenched beliefs and recognize that there are many causes — not one — of this spectrum disorder and many ways to help — not one way. What we need is to respect the diversity of views of those in our community and, most importantly, the diversity of people with autism.
Thank you “anonymous!” I, too, read various perspectives and agree and disagree not on the basis of who’s writing, but on the basis of what’s written.
And Harold (with whom I sometimes agree and sometimes disagree!) – you say “Autism disorders and deficits are more complex than simple presence of absence of physical pain.” Of course it is!
My point was that David K., by writing as he did, suggested that the Change.org bloggers would happily allow autistic children to suffer any pain at the altar of neurodiversity. And my response is that they certainly would NOT – and that Kristina, at least, has worked hard to support her son’s therapeutic and learning needs.
Nevertheless, there is a very real point at which you, as a good dad, and Kristina, as a good mom, do diverge. Your divergence isn’t about whether you’d care for a physically ill child, or fight for your child’s rights. You would and do.
Your divergence is, rather, over the question of “once you’ve addressed those physical and developmental challenges you can reasonably address, what do you do next?” Do you see your child’s remaining significant “differences” as simply who your child is, and embrace them? Or do you see those “differences” as serious obstacles to your child’s happiness – and work to “cure” them?
Personally, I can easily understand both perspectives on that issue. And depending upon the day and the situation, I can fluctuate on the issue. Sometimes, I seem Tom as really extraordinary – in the most positive way. Other times, I see his “differences” as overwhelming obstacles. And I honestly believe that both of these things are true: Tom IS extraordinary (in a positive sense) – AND he is living with serious challenges that threaten to limit his opportunities.
What troubles me is that intelligent people of good intention, who truly agree on the basics of what matters, can feel that they’re in such conflict.
Lisa (autism guide)
Anonymous
If you mean what you say then encourage Dr Chew and other Neurodiversity advocates to step back from the idea that they have the right to speak on behalf of other people’s autistic children.
If you mean what you say then encourage the high functioning autistic persons with Autism and parents of such persons to understand that some persons with autism live with much more challenging deficits than they or their children.
Ms Rudy herself is unfailingly civil but has a neurodiversity perspective which is easier when one does not have a more severely autistic child.
Parents will fight for their children, by nature, and by law and morality, and it is time for ND advocates to respect those realities and stop THEIR incessant attacks.
No one, absolutely no one, is trying to cure the leaders of ASAN. They should stop interfering with other peoples children’s rights and family decisions.
Harold – you make an excellent point, my experience in raising Tom is very different from your experience in raising Connor. And yes, that does matter!
Tom’s “deficits” lie largely in the areas of social and communication skills – and while he is definitely autistic, he is still able to communicate not only needs but also ideas. It’s easy enough for me to say “oh, but he’s such a sweet kid, and has so many abilities, that I would never want him to change.”
Tom isn’t sick. He’s not in pain. And that means that, in many ways, his “disability” is quite distinct from that of many people on the spectrum who ARE sick, in pain, unable to communicate, joyless, and even self-destructive.
For that reason, among others, I’m very much in favor of pushing toward a “break-up” of what’s now the autism spectrum. While we obviously have some commonalities, we are NOT all living in the same situation. And I’m quite certain that we are actually looking at at least 3-4 completely distinct disorders, with completely different etiologies and symptoms!
Lisa (autism guide)
Lisa says “you can be a caring and involved parent who deals well and efficiently with medical and educational issues and ALSO disagree with you (and many others) on whether or not autism, per se, should be ‘cured.’”
Lisa,
This is not merely an intellectual debate over semantics; your ND friends intend to actively interfere with and obstruct those who seek to treat, recover or cure (take your pick of verbs) their children suffering from disability, no matter what label you give it, for their own political purposes. This makes them morbid opponents (and makes your specious apologies for them an unseemly collaboration). There is no room for equanimity with hate and fear mongers who would exploit the disabled.
Lenny, you say: “your ND friends intend to actively interfere with and obstruct those who seek to treat, recover or cure (take your pick of verbs) their children suffering from disability, no matter what label you give it, for their own political purposes.”
I assume you’re not speaking here of bloggers, journalists or activists with whom you happen to disagree, but about active physical, legal or financial obstruction of the rights of individual parents.
I have to say that I’m not sure what type of actions you’re speaking of. I’m not trying to be cute, but I honestly don’t know of an instance in which a parent has been actively obstructed or interfered with. Can you explain what you mean? Have you or others been physically or legally attacked by neurodiversity advocates for doing what you feel is right for your child?
If you really do know of instances in which neurodiversity proponents have harmed or interfered with parents on a personal level, I’d appreciate knowing about it.
If, on the other hand, you’re simply objecting to ND rhetoric on the web or in political forums, then I would say that’s part of the same process we’re all engaged in – otherwise know as public debate.
Best,
Lisa (autism guide)
David Kirby is a paid publicist. He’s been backpedaling furiously since his comment that if autism diagnoses don’t decline then the thimerosal hypothesis should be laid to rest. If it wasn’t for rumor and innuendo, Kirby would be speechless.
From Wiki: Michelle Dawson (born 1961) is an autistic person and an autism researcher.[1] [2] She has written a paper[3] challenging the ethical and scientific foundations of Applied Behavior Analysis (ABA)-based autism interventions. She also challenged the medical necessity of ABA for autistics in the Supreme Court of Canada in Auton v. British Columbia, 3 S.C.R. 657. [...]
Her friend of the court filing helped autism parents lose the case and their fight to get Provencial funding for ABA treatment for their children. Please Lisa, disabuse yourself of the notion that the ND creed promoters have no less intention than influencing legal and political policy at the expense of our children. -Lenny
I agree with Lenny, who’s monitored posts on countless listservs and blogs, and with David Kirby. There are parents out there, academics even, who practically fetishize their children’s autistic symptoms — describing them poetically rather than physiologically. Or it’s written off as “God’s will.”
There are too many parents of children on the spectrum who are clueless about their children’s health. I’ve seen “autistic” symptoms go away shortly after medical treatment, such as giving supplements to counteract nutritional deficits.
Should a nonverbal child be free to roll around on the floor, hunched over a play ball? Or should that child’s parent(s) get an X-ray and maybe find the entire colon filled with feces? The child gets cleaned out, the posturing ends.
Anyone who believes children’s medical treatments are not being interfered with is either uninformed, extremely naive, or equivocating.
Kirby often retracks and one wonders if this truly is mistakes or calculated to spark a spark. I’d like to know just why Kirby was in the bed rooms of these children the ‘whole night’ to even post “heard them wail in pain the whole night through, bang their heads into dented closet doors, hang their inflamed and pain-wracked bellies over the sofa back in vain attempts for deliverance from the agony they cannot describe, because they can no longer speak”. That is terribly odd. He is not a medical expert to even be in the room’s of ‘children’.
Autism runs deeper than physical symptom’s and in fact, medical conditions are not at all part of a diagnosis of autism. It is true, co-morbid’s do coincide and many other things mimic autism. Nutritional deficits is one of those that mimic. One has to determine which of any is related to autism at all. My child was born with a ton of gas and a sweat-ball. The gas runs in my dad’s side of the family, and I am sorry to admit my kid got it from me. Autism or not, my whole family suffers from extreme gas (needless to say at our family parties, we are a gas!)
The ND community are a group of people who have come to the greatest acceptance of all: accepting who they themselves are and one day I hope my own child can walk this same path. That community has a different goal, one that is more of a benefit to those with autism than those who are the parents. At the same time that I have this hope for my child, I try not to step on those who have other desires for their own kids and Kirby can take a lesson in that. Every one has a function and to alk atop of those he disagree’s with is nothing but media attention. Not every child suffers from gut issues, those that do don’t all have autism.
Yes, define what autism consists of, and then which it consists for. Treat each issue as they come, not as a whole as part of one disorder. And also, don’t step on toes of those who one can learn from.
Three cheers for “Anonymous” for bringing some semblance of civility back into this discussion. Let’s remember that there are so many more things that unite us as parents of kids with autism (yes, it is a VERY broad definition) than things that divide us. We surely need to be clear on what divides us but not let that interfere with the work we can do together to accomplish meaningful improvement in the lives of our children (without going bankrupt).
Let us remember that those whom we disagree with are sincere in there motivations and truly are trying to help their children. An important point was made in this discussion: regarding the points we don’t agree on, we should not speak on behalf of all parents and not frustrate the efforts of those whose views differ from our own. We are stronger together! Sure, we get more media attention when we are divided but we just become a running soap opera and society becomes more familiar with the personalities involved than the issues that are at the core of what we’re trying to change.
Wishing all a very good 2009. May our kids be happier, make progress throughout the year and be successful in their endeavors. God bless you.
“If we believe that those difference, themselves, cause pain – and have no positive benefits – then of course we want to end them (or “cure” them). If we believe that those differences, themselves, are valuable and worth preserving, then we support and enable them.”
Fine, lets take this back to the basics. Autism is defined by the DSM IV criteria – that is, by definition, what autism is. Which of the items on the criteria do you view as being just a “difference” that is “valuable and worth preserving”.
Please list the specific item (such as A2a) of the traits that you view as desirable.
If you are referring to other secondary traits that you view as “autism” then we aren’t talking about the same autism and you are doing the same thing that you accuse Kirby of doing, mainly adding in additional traits to autism (such as GI issues) that you say aren’t involved in the discussion.
MJ – what I said was this: “If we believe that those difference, themselves, cause pain – and have no positive benefits – then of course we want to end them (or “cure” them). If we believe that those differences, themselves, are valuable and worth preserving, then we support and enable them.”
I am describing two perspectives. I believe both of these perspectives are worth considering.
As regards your request for me to select individual criteria and label them as “desirable,” let me say this:
There are autistic traits which, depending upon circumstances, can be quite valuable indeed.
Intense focus on a subject of passionate interest and lowered need for peer acceptance, for example, can lead to a number of positive outcomes.
Again, I am saying these traits CAN lead to positive outcomes – not that they ALWAYS will or MUST.
Lisa (autism guide)
Nhokkanen – you say “Should a nonverbal child be free to roll around on the floor, hunched over a play ball? Or should that child’s parent(s) get an X-ray and maybe find the entire colon filled with feces? The child gets cleaned out, the posturing ends.”
See, to me this seems like a false set of options. If a child is suffering from GI symptoms, no sane person would say “let him suffer!” The only reason that might happen is the GI symptoms are unrecognized, which, granted, is certainly possible in a nonverbal child.
If that child, after being treated for GI symptoms and being “cleaned out,” no longer shows symptoms of autism, I’d say that child wasn’t autistic in the first place. Rather, he was suffering from unrecognized GI symptoms.
Do you really believe that well-intentioned parents would deliberately ignore obvious signs of physical pain in their child on the basis that the pain is “god’s will?” Granted, there are a few cultists who might go that route – but they are few and far between!
Lisa (autism guide)
I don’t believe parents or those of the ND community would leave those medical issues untreated in the name of acceptance of autism. One also has to remember those with autism often feel pain differently and many like my child, shows he has no pain at all. My child has had a few infections and other such things which should had caused any other person great pain. He never showed a sign at all and I took him to the doctor only on a hunch just to find out the infection was at an advanced stage.
My son had many GI issues which we did treat. As he got older, those issues did get better however his autism remains.
I believe my son’s autism was inevitable, for there was nothing at the time known to prevent it and for my child, I believe it is genetic. This statement is true for many and Mr. Kirby misinterprets that. Celebrating autism to me means awareness, celebrating the child and the abilities that child has and potentially can gain. Not every parent seeks recovery, and that needs to be respected as well. I believe Temple Grandin started out non verbal, severe autism at a time when few choices were out there for intervention. She is a good example of what recovery doesn’t look like and the potential she had at a time when little hope as offered to parents. She is some one to celebrate.
Lisa – you did not answer the question.
What you listed :
“Intense focus on a subject of passionate interest and lowered need for peer acceptance, for example, can lead to a number of positive outcomes.”
Is not a criteria from the DSM-IV.
Intense focus on items is certainly included in the criteria but the “passionate interest” certainly is not. Unless you are confusing the word preoccupation with “passionate interest”.
And where in the DSM-IV is a “lowered need for peer acceptance”? Impaired social skills are on the list but this does not imply a lowered need to peer acceptance.
So lets make this simple:
1. Do you agree that autism is defined by the DSM-IV criteria?
2. If the answer to 1 is yes then which criteria specifically do you think is desirable?
3. If the answer to 1 is no then please provide a definition so that we can be talking about the same disorder. And explain what makes your alternative definition of autism any better than Kirby’s.
lisa, you have very eloquently communicated the reason why you should not be heading up this blog alone. you have no experience with the “autism” that countless parents are dealing with. it us unlikely that autism is going to be separated into the 3-4 etiologies you suspect are involved, at least not any time soon. so for now, there are thousands of sick children bearing the autism label, and your blog does absolutely nothing to serve them. why not invite someone with experience and knowledge to address the issues that are relevant to thousands of families to whom you are unqualified to assist?
“Tom’s “deficits” lie largely in the areas of social and communication skills – and while he is definitely autistic, he is still able to communicate not only needs but also ideas. It’s easy enough for me to say “oh, but he’s such a sweet kid, and has so many abilities, that I would never want him to change.”
Tom isn’t sick. He’s not in pain. And that means that, in many ways, his “disability” is quite distinct from that of many people on the spectrum who ARE sick, in pain, unable to communicate, joyless, and even self-destructive.
For that reason, among others, I’m very much in favor of pushing toward a “break-up” of what’s now the autism spectrum. While we obviously have some commonalities, we are NOT all living in the same situation. And I’m quite certain that we are actually looking at at least 3-4 completely distinct disorders, with completely different etiologies and symptoms!”
Itolduso says: you have very eloquently communicated the reason why you should not be heading up this blog alone. you have no experience with the “autism” that countless parents are dealing with.
Actually, Autism.About.com isn’t a blog, it’s a site on the About.com medical channel with more than 300 articles. All of them go through medical review, which means I research them, etc. I’m actually not allowed to reprint materials or have guest authors. I can, however, cite extensively from others, or reprint content on the blog with attributions.
I’d have no objection to posting materials from different points of view (do it all the time!). In fact, materials from the perspective of parents with more profoundly autistic children would probably be a great addition to the site.
Please contact me with specific ideas for articles, blog posts, etc. – just know that articles, unlike blog posts, do go through medical review. Also, I am not likely to post content that includes accusations toward others.
Thanks,
Lisa (autism guide)
lisa, more evidence that you should not be hosting this blog alone. do you understand that when non-verbal children consistently roll around on the floor and hunch over a play ball, unable to communicate that they are in pain, the parents are told that these are “autistic behaviors” and behavioral diversions and interventions are typically the only suggestions that are offered? Most of us have to FIGHT to get any kind of medical investigation, even as simple as an abdomen x-ray. It is not just “possible”, it is a reality that non-verbal children suffer from a host of symptoms that go unresolved because they can’t communicate, and the manifestation of their suffering is interpreted as behavioral.
sandy makes a great and often unrecognized point with regard to the pain threshhold of some individuals with autism. when my son was very young, he could get bruised, scraped and cut and not indicate that he felt any pain. it was like he was under anesthesia some of the time. as we introduced various biomedical interventions, his pain threshhold normalized along with his ability to verbally express pain. Who knows how many non-verbal children have undected medical issues?
sandy, like any responsible journalist, david kirby investigates the claims being made by parents with regard to their sick children. he spends time in their homes, which affords him the opportunity to be present when the children wake up in the night, crying in pain. you don’t have to be a medical doctor to observe a child in pain.
MJ, “intense focus on items,” “passionate interest,” and “preoccupation with” are different ways of saying very much the same thing. If you prefer the term “intense focus,” that’s fine.
The point is that people with autism express that focus/interest/passion in different ways – and in some cases, that focus/interest/passion is disabling, while in other cases it’s enabling. I’m not suggesting that a preoccupation/focus/interest in flipping light switches is a great boon. But a similar preoccupation/focus/interest in, say, mechanics could and does lead to some pretty impressive outcomes.
Lisa
I respectfully disagree with itolduso. Any one can have co-mormid’s and it is not consistent with all who have autism that all share the same co-morbid’s. Those co-morbid’s may not be related to autism at all and in fact, the criteria doesn’t not include medical conditions. It would be a effect of autism that a non verbal child could not express their discomforts and that’s if they even recognized they had discomfort. My child who has autism has been ’sick’, but then many other kids without autism can have the same ’sick’ things. Autism can surely make the co-morbid’s 100 times worse however one must separate those from autism.
As for Mr. Kirby, spending time in a child’s room sleeping in quite inappropriate and yes, not being a doctor or even an expert in autism would make his observations useless. My child thrashes and cries all night long when he was younger. He also had night terrors where he appeared totally awake and in extreme pain. It was total night terror fear, not pain at all and he was totally asleep. The longest night terror he’s has was a straight two hours and I’d had loved for Mr. Kirby to evaluate that one and see what his inexperienced conclusion would had been. I’d bet he say just as he did here. This lasted for my child until he was 5 or 6 years old. A journalist can and this one obviously did, interpreted those sleep patterns inaccurately based on he really has no experiences other than he is a journalist.
Also, because a child often does not feel pain as other’s, they can often mimic that they do have pain. My verbal child tells me his has a sore throat all the time only there is nothing wrong with him. The signals a body has to inform a body of this or that simply do not work right being a non verbal or verbal child. Kids, like mine, simply do not feel the same senses that we do and a verbal child attempting to explain what ails them is just as difficult to figure out as it was when my child was non verbal.
I also disagree with this sites host not hosting. This site offers much info and topics and when one disagree’s with other’s opinions, it is just plain not right to suggest they not host the site. One must remember the host was the one who presented this topic and their own opinion and I have said many times before, they have a right to their opinion and if one does not agree with everything, politely disagree. The host here, any time posting a topic, opens themselves up and questioned of their intent and why for why would one do this, knowing this may be the outcome? for the benefit of other’s, and I for one regardless of topic, appreciate that effort.
“Intense focus on a subject of passionate interest and lowered need for peer acceptance, for example, can lead to a number of positive outcomes.”
While some people who have autism may display these traits, they are not a diagnostic criteria, they are not in the DSM-IV and they are not traits that only people with autism possess! This is the flawed argument the ND crowd attempts to advance – but these traits are not autism and if you diminished true deficits of autism you will not necessarily remove these traits.
Autism is a disability, otherwise these folks wouldn’t need supports or assistance. If a treatment or therapy makes someone better able to cope or be more independent or in less pain or control their own behavior better, or be social enough to hold a job, then that is a benefit.
Someone in a wheelchair due to CP or another disability or disorder doesn’t sit around and delude themselves that they are better off not having the function of being able to walk. Some deaf people don’t want to have cochlear implants and say they wouldn’t want to hear. Well, that doesn’t change the fact that they are missing one of their senses, they will never hear music, hear a loved one’s voice, hear the world around them. Notice you never see people who lost their hearing saying they don’t want to hear again. Because they know what they are missing.
People with autism often don’t know what they are missing, or they don’t realize much of the treatment/therapies could help them cope better, have friends, live more independently, etc. Part of their disability is resistance to change, not listening to others, not being able to understand other’s viewpoints, so it’s practically a given the ones who can express themselves wouldn’t understand the benefits they could be missing out on.
And the discussion for adults should be totally separate than that for children, especially newly diagnosed toddlers and preschoolers. It is harmful and negligent to present doing nothing as an option to these families, and telling them interventions are bad, that “curing autism is neither possible or desirable” – what a damaging, untrue statement!
They certainly have a right to express their views, but they have nothing to do with many of us, and I wouldn’t let them near my kids, I shudder to think where my kids would be if I listened to that kind of advice.
And yes, people are being denied treatments and therapies as a result of these folks advocating against things like having insurance cover autism treatments, railing against ABA even though it is supported by evidence, by misleading new parents, etc.
Every families should have access to ABA, other intensive therapies, speech, good IEPs, OT, and any biomedical therapies that help the child’s symptoms directly or indirectly.
It would be interesting to know of the ND community, which had interventions and what they were. Most of that community once had parents
and I’d bet, just as my own son, he didn’t get where he is today without some interventions and a good mom to weed through those intervention choices.
The ND community does belong along side us. Yes, autism is a disability and many who became disabled to know what they are missing have often stated they see a passionate side they otherwise were to busy to see. The ND community offers parents the idea that if there just happens not to be recovery for let’s say some kids, or the use of invasive treatments, a child can still grow up to be great and have the disability of autism.
I myself have never offered my child ABA, biomedical, special diets and so on yet my child has made great progress. At this time, autism isn’t curable, that statement is very true and if it wasn’t, we’d all be running out there going for that one or two interventions. Autism may not be curable, but there certainly is hope for progress and many with autism have made great strides.
sandy, the suggestion was that there would be a benefit to having a co-host who has knowledge and experience with children with the autism label who also have the co-morbid diagnoses, since lisa has no experience or knowledge in this area. please do not misrepresent my comments.
sandy, is your argument that if it isn’t happening with your child, it isn’t happening with any other child?
Sandy,
What is it that makes you not part of the “ND community”?
sandy, what do you call it when a child once diagnosed with autism no longer meets the criteria and is deemed indistinguishable from their peers?
david kirby does NOT say he slept in children’s bedrooms, that is your spin, sandy, and it is quite distasteful on your part. he is testifying to what he has witnessed multiple times. he is testifying on behalf of the many parents who have not been heard, and on behalf of their children who can’t speak for themselves. it is so disheartening when a parent of an autistic child who is suffering is second guessed or attacked by another parent, who is fortunate that their child is not suffering. to set the record straight, this is what david wrote:
“I have seen their wonderful children. I have heard them wail in pain the whole night through, bang their heads into dented closet doors, hang their inflamed and pain-wracked bellies over the sofa back in vain attempts for deliverance from the agony they cannot describe, because they can no longer speak.
I have seen children with autism run out of the house naked and into the cold, black night, only to be found hours later wandering down a lonely back road.
All of these children were perfectly normal before they “got” autism, at around age two, or so. Like their parents, I cannot look at them without thinking that recovery from autism, for them at least, is most desirable, indeed.”
“MJ, “intense focus on items,” “passionate interest,” and “preoccupation with” are different ways of saying very much the same thing. If you prefer the term “intense focus,” that’s fine.”
Lisa, the first two phrases are your statement, not mine. The “preoccupation” is my word and I got it from the DSM IV. I don’t think these phrases are equivalent, and only one of them is in the DSM IV.
“The point is that people with autism express that focus/interest/passion in different ways – and in some cases, that focus/interest/passion is disabling, while in other cases it’s enabling. ”
The point is still this is not DSM IV autism. From the DSM IV :
(3) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(d) persistent preoccupation with parts of objects
Which one of these items are you referring to?
Since you are seemingly refusing to answer my earlier questions, either about the definition of autism or which DSM IV criteria you feel is beneficial, I am guessing that you cannot.
Going back to the original statement :
“Recovery from autism is neither possible nor desirable.”
The above means that your defense of this statement is without merit and hypocritical.
So, for the record, which is it? Autism has some benefits that are listed in the DSM-IV, you are talking about something other than the common definition of autism, or is the above statement reprehensible?
Or are you going to continue to “focus” on not answering the question?
itolduso~ I respectfully beg to differ again: you said “the suggestion was that there would be a benefit to having a co-host who has knowledge and experience with children with the autism label who also have the co-morbid diagnoses, since lisa has no experience or knowledge in this area. please do not misrepresent my comments.”
Kirby would have more knowledge not even having a child with autism? Lisa brings in actual experts to ask questions to, and they comment here all the time. Lisa opens herself of for these such comments and why in the world would any one do that?? Yet, after so many argumentative threads that comments are directed at her, she continues. She is the best host I have ever seen on any site I’m part of, and that is my unbiased opinion. She posted a topic recently that I don’t agree with, yet it is a topic of interest. if I may coin a phrase, “Lisa boldly goes where no mom has ever gone, to meet strange new worlds and to bring those worlds together”. I might also add, she is always quite chipper and maintains composure no matter what is directed towards. I have nothing but awe for what she brings to this site.
I had a typo in post 22 where as there was not in post 17. Mr. Kirby of course is not sleeping in the child’s room; the children are and that man is in there while the children are sleeping. The fact still remains, he is no expert to interpret what is going on with these children.
I am sorry you never met a child who had autism from the day he was born, with no known reason for him to have autism other than genetics. The focus generally is those who regressed and children like mine are often forgotten about. My child never regressed, he simply never progressed as his typical peer babies, toddlers or pre K’ers. It’s funny that as an infant, while at the hospital it was so obvious but missed, and missed by me. My child was never ‘normal’ and maybe due to that I had a longer time to accept he was going to be delayed and I may never hear a word from him. But I am a patient mom, and am in general. I had to wait some years before I heard words from my child and his progress was at his own rate, not mine.
I have no argument and I will not get into your argument. Either accept my opinion or you don’t.
When a child no longer meets the criteria, I’d first ask whose criteria are we speaking of? An IEP, SSI or a medical doctor? When this happens, and it does, I call it progress. What would you call it? It doesn’t mean they do not any longer have autism; it means those symptom’s of it are not as debilitating as they once were. I’d imagine the ND community still has many issues they deal with, just because they don’t meet the full criteria as an adult doesn’t mean they don’t deal with autism just the same.
I mentioned this before. A comparison would be a movie with an actor I admire. He was blind most of his like and surgery regained his vision for a short time. Since he relied on other senses to replace his sight, once he had sight he was in turmoil. The things he once knew he didn’t and he had to then learn what sight was and how to use it.
This very much would reflect a child with autism and recovery, cure. Their senses used differently would not over night be gone; they would not become verbal over night either. They would be in turmoil of what their senses are telling them and would continue to need much more therapy for this very reason. A cure is not so simple, where as progress can be seen daily of which is what my focus is on.
jypsy~ can you please be more specific? I can take your question a few ways but I want to be sure I take it the right way before I answer.
Sandy,
Perhaps the interpretation mistake is mine. You speak of “the ND community” as a “them”, something you are not a part of. Maybe you use the term as I would use “autistic community” (though my term would be more specific to those with an ASD). Others speak of the “ND community” as anyone who supports “neurodiversity”. Since I see nothing in your comments that leads me to believe you don’t support “neurodiversity” (at least, the definition of neurodiversity I support), I wondered why you were not identifying as one of “them”.
However, like I said, the misunderstanding (if there is one) could lie in what your definition of “the ND community” is.
So, let’s go back and start with – what is your definition of “the ND community”?
jypsy~ my use of ‘them’ was used so there was no mistake that I am just a mom with a child with autism who happens to agree with some of the neurodiversity community when it comes to acceptance of ones self. I didn’t want there to be a misunderstanding that on my end, that I had a ASD disorder which would leave me maybe biased (according to other’s). I am just a typical mom with maybe more an open mind than other’s, or at least I try to see any point of view. My intent really was to let other typical parents know they don’t always have to only be a part of one community, or only agree with one and that some adults have the right idea. I also shortened it to ND just because it was easier.
In either community, there can be over bearing people and there surely is. I do not of course agree all with either and I don’t always think adults can relate to parents feelings and what they agonize about because they’re not in that spot. Many years ago when my child was still quite young, I came across a site a man owned who has ASD. Parents agonize over what’s right, what’s wrong, what should they do, why didn’t they know. This man had an entry of what his mother did right and it got me to thinking what my child might say, had he ever become verbal, about me? Each community has something to offer, one thing I have learned from other’s is to try to think like my child does, and what he might want.
Recovery to me means I would not expect to see progress without it. It would mean how my child functions due to autism out ranks who he is as a person and that autism cant co-morbid with a child. I am sorry, that is something I do not believe. believe it or not, my child laughs, he smiles, he has much joy in his life. Autism did not take that away from him nor me. I am still very happy this child was born to me. People are stricken every day with far more worse things than autism and never see recovery. If recovery/ cure ever came an option with autism, we’d then agonize of that choice, side effects, safety of it. We’d still have choices to be making and some would not choose it.
MJ, I feel that you’re trying very hard to back me up against a wall and force me to say that anything to do with autism is dreadful and anything that could potentially prevent or cure it is terrific.
Using the appropriate terminology, then, YES! I think that Parts 3A and 3D of the diagnostic criteria have the potential to be the source of important positive attributes. NOT always, but SOMETIMES.
Do I agree with the statement ““Recovery from autism is neither possible nor desirable?” Not in all cases, but in some.
Do I disagree with the statement? Not in all cases, but in some.
Am I in favor of pursuing treatments and cures for autism? Some treatments for autism do not seem to me to be useful, safe, or worthy of support. Others seem to me to be reasonable, helpful, and worthy of support.
People with autism are different from one another. Parents of people with autism are different from one another. Therefore there is no one simple response to autism spectrum disorders, to the life choices of people on the autism spectrum, etc.
I can’t apologize for seeing the grays in life – or for acknowledging that people on different sides of an argument might both have something important to say.
Lisa
Sandy,
Can I ask you again – what is your definition of the “ND Community”? Do only those who are “neurodiverse” make up the “ND community” or does it include, say, Dr. Chew, a “neurodiversity supporter”?
I’d have to say it would include both and any, just as the autism community includes those like Mr. Kirby. I would also have to say I have disagreed with many on either who make up each, and they have disagreed with me. I see no reason why there would have to be exclusion of either, other than such orgs that decide what their motives are and then one would need to consider what they could bring to that effort. I also do not agree with all orgs out there.
I’m not sure if that answered your question however it was a tricky question. I have told my son since I knew he had autism when he was 3 that he did have autism. He was a child at that time with his own agenda, looking at him he had a world of his own and anything I said I had no idea if he paid attention or heard me at all. Turns out I have a multi tasker, he remembers things I sang when before he was 1 yrs old, and many other things as well. His expressive language of course makes it hard to pin point his memory but I eventually get what he’s trying to relay. my memory aint that good as his is to remember what he did. I have always told him he is different but his different does not mean it is a bad different. Ever since he was little, I have said to him at bed time or during melt downs “it’s going to be ooooooookay, I know it’s hard for you but that’s ok”. I believe in essence that is the message of the ND community.
Ok, then if the “ND Community” includes (aor the sake of this conversation) autistics and non autistics, do you consider yourself to be part of it? If not, why not?
I consider myself a part of many things, many area’s and I have met people online and chatted with many from all walks within the autism community, personally and net-wise. I’m actually all over the net but often do not use my first name for obvious reasons. I do however see from both area’s neither really accepts the other for what ever reason. That should change and then maybe better conversations of interest can come of it. People like Mr. Kirby is not helping this at all.
I believe you completely avoided my question. A simple “I choose not to answer your question” would suffice.
If you’re asking if I am an active member of any one ND org or site that is not easy to answer. Officially, no. And why not? I have not been invited and generally I go to places I feel I can offer something and I am not sure I can offer anything except to other parents. If that does not answer your question, then I am completely not sure what you’re asking.
Were you invited into the autism community? I don’t believe I’m “an active member of any one ND org or site” but I think you’ll find people have firmly placed me in the “ND community” (and gone further to falsely attribute some views of some in the “ND Community” to me as well as some views that the “ND Community” are said to hold but clearly don’t).
My question stems from, as I said above:
“Others speak of the “ND community” as anyone who supports “neurodiversity”. Since I see nothing in your comments that leads me to believe you don’t support “neurodiversity” (at least, the definition of neurodiversity I support), I wondered why you were not identifying as one of “them”.”
It’s my belief that you wouldn’t be “invited” into this community anymore than you’de be invited into the “autism community”. If you believed every word in the Bible would you wait for an invitation before calling yourself a Christian?
If you’re afraid to identify as a member of the ND community for the same reason you’re afraid to use your name everywhere (my legal name is janet norman-bain, it’s no secret, anyone can google “jypsy autism” and find out all about me) I guess that’s understandable given the mud-slinging, and worse, that has been part of the autism community online the past decade or so.
I was simply curious why you seemed to speak of “us and them” when you seemed, from your comments, to be a “them”. If you didn’t consider yourself to be a “them” I was curious why not.
Neurodiversity is an idea or belief, not a club, an organization, a website or a place. Please don’t wait for an invitation to join us in promoting human rights for autistics and people of all neurologies.
jypsy~ I’ve been to your site many times way back when, maybe not for a while recently. I’m not sure the same site is there foronce the link didn’t take me there. Personally, very few know my full name due to I practice on line safety, not only for myself but my family.
The us and them maybe I didn’t make clear and I suppose it is hard to make it clear. I just wanted my intent to be clear, that I am just a parent who also agree’s and disagree’s with many things, in hopes other parents can see it’s ok not to be a followeer, sort to speak. Many have idea’s that are good ones. I really did not intend to exclude me or include me into anything, other than to say exclusion is hardly right and I believe Mr. Kirby does this, as well as others. No matter how I presented it, some one I was sure would have something to say, so I gave it some thought before I typed it out. There seems to be lines drawn and I want to find a great big eraser. Needing an invite for me just being a parent is ‘acceptance’ and I have had my fair share of mud slinging on both ends. The lines are that it’d be like walking into the opposing party (and of course for some vice versa)- why we all cant walk together is beyond me. Nothing is solved by it, nothing is heard or retained other than the anger. I’m not sure why there has to be so much of that in any community, but there is. I do offer human right within my state for adults, and have been advocating ever since I was very young. Only since my child was born had I expanded to children which honestly is much easier than what I do for adults.
You’ll find my site (with a link to the web archived version of my original site) at http://www.PlanetAutism.com (see http://therunman.blogspot.com/2008/03/important-please-read-jypsyisnnet.html for an explanation of the move)
The fact is, Neurodiversity is made out by many (who consider themselves not to “believe” in it) to be something it isn’t. It’s my opinion that in reality very, very few parents are so radical that they do not believe in neurodiversity – that is that we all, no matter what our neurology, are people and as such have worth and deserve human rights.
Sadly, Neurodiversity has been made out to be all sorts of things by people claiming to be against it. Like “acceptance” has been characterized as “leaving them in the corner to rot”… Of course we who embrace acceptance know it is no such thing but it likely makes it hard for some people to say out loud, or in public, that they accept their child.
Thank you for this conversation.
I can see that there are some folks that post here that try to be fair to all “sides” in this argument about neurodiversity and “fix-it-now.” I try to remain in that group. As such, I also respect those that are in each of the camps. It is perfectly fine to have an opinion.
But what is the purpose of venting your frustrations on individuals or goading them to say something or other? ALL EFFORTS TO IMPROVE THE LIVES OF PEOPLE WITH AUTISM NEED TO BE SUPPORTED.
For those who wish to see the joys despite what they have to go through, I am happy for you. For those who need to fight and fight and fight against the disorder, more power to you. For those who see virtue in both, congratulations.
Here is a quote I really like and need to find more ways to apply in my own life. I hope maybe this can help others as well:
“If we allow our attention and energy to be taken up in efforts to keep others right and remedy their faults,we are wasting precious time. We are like ploughmen each of whom has his team to manage and his plough to direct, and in order to keep his furrow straight he must keep his eye on his goal and concentrate on his own task. If he looks to this side and that to see how Tom and Harry are getting on and to criticize their ploughing, then his own furrow will assuredly become crooked.”
– Shoghi Effendi, 1925
Lisa,
I believe my last comment is caught in moderation (it has 2 links in it that are likely causing that)
I recommend the youtube video ‘CDC chief admits that vaccines trigger autism’
http://www.youtube.com/watch?v=Dh-nkD5LSIg
When listening to Julie Gerberding’s weaselspeak, it becomes abundantly clear that there is something profoundly wrong with the whole vaccination scenario and that there is obvioulsly a disinformation campaign being waged, to avoid a flood of compensation claims from affected parents and the public’s complete loss of confidence in vaccination.
There is also a youtube video on which US Snr Attorney Robert Kennedy Jnr is being interviewed and on which he calls studies which supposedly show that there is no link between vaccines and autism ‘tobacco science’ and ‘junk science’.
Another youtube video I highly recommend is ‘Creating a nation of zombies’.
The internet article ‘The deliberate de-neuralization of America’ is another excellent resource.
There is no doubt whatsoever in my mind that vaccination is an organised crimnal enterprise along the lines of a mafia protection racket and that the widespread and horrendous harm caused by vaccinations is planned and delberate.
Hence the fact that Thiomersal was added to increasing numbes of childhood vaccines even after 10 babies died in a Toronto hospital in 1977, when an antiseptic containing Thiomersal was dabbed on their umbilical cords!
jypsy~ this was a nice conversation and there should be more. More topics to include all. Thanks for the link, you site to my eyes looks just as nice as the last time I seen it and it’s always nice to read people’s personal stories too. I hope your site counter get’s many clicks. I think I once posted my site once, maybe a few years ago. One thing about about.com is lack of faces! Being able to share cool kids and families.
Yeah, John Travolta is an uneducated stupid idiot
who allows a cult for the rich to unduly influence
decisions he makes (I believe Travolta is a high-school dropout and ex-Catholic) who like all the other actors are without talent and have just lucked into a job that can pay them 10 million dollars for a couple of months then they go and jerk off and bitch when a photographer takes their picture. Hard to prove if Travolta(revolta) was guilty but I would venture a guess that him and his wife had to know that medication would have prevented this. Travolta’s got this perpetual dumb ass look on his face but he’s smarter than a fox. Hey he lost a son and has to live with it and move forward end of story